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One year...💙

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    One year...💙

    Today marks the anniversary of my initial MND diagnosis....consultant neurologist said 'suspected' & that she would arrange for me to see her colleague at St George's for a second opinion. (Didn't happen until June)

    ​​​​​​My view is once the word suspected was used it was more or less a foregone conclusion. Neuro rehab community team services kicked in within 2 weeks.

    So back then I was walking with a r foot limp/drop....several falls outside. Walking felt like 2 steps forward and one back....I described as walking through mud

    A general feeling of weakness and a sense of this was something serious. I remember saying to my GP I'm worried this could be MND....he said highly unlikely...sadly he was wrong.

    So now a year on I'm using a self propelling wheelchair indoors (this week), right-hand is very weak...for example cutting with a knife or using scissors not possible. My r little finger appears to want to leave & goes off to the right. Index finger nearly useless. Left hand weak...however better than the right.

    I'm eating (carefully to avoid choking) moist foods in general. Drinking ...again carefully. Drink 2 ensure drinks daily to bump up calories & protein.

    I'm using NIV all night and a couple of hours in the day when I'm resting. Breathing is weak....cough is weak...using breath stacking to try & improve. Awaiting home visit from respiratory team (hospital).

    Voice is indecipherable (mainly)...although some times better than others. Started using my predictable app as I banked my voice.


    Throughout this year I've been very grateful to have this forum....gives me a sense of not being alone with this...my MND family.

    No idea how long I'll be on this 'journey' (hate using that term) because there seems a huge difference between us all....& individual choices we make along the way have an impact.

    Here & now I'm alive & kicking. Taking each day as it comes & although there are dark days on the whole I'm ok.

    I live in hope 🙏💙

    Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

    #2
    Happy birthday if that is right thing to say 🎂😊🍰🎁xx
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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      #3
      Glad you are still here with us.
      Hi, I'm Eddie.
      Started with wobbly left ankle in Nov 2020. Diagnosed 22 Oct 2021, confirmed by 2nd opinion 4 days later.
      Still walking and talking, and wondering what the future will bring.

      Comment


        #4
        Happy unbirthday! Not sure if happy is right either.

        Linda I wish I could give you a real hug. 💕🤗😘🤗🤗💗
        when i can think of something profound i will update this.

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          #5
          Not an anniversary any of us wanted but I’m nevertheless glad to have made your “virtual” acquaintance. Wish it could have been under better circumstances but hang on in there

          Comment


            #6
            matthew55 😂yeah MND birthday😘
            Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

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              #7
              Thanks guys....progression very different for each of us. 💙
              Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

              Comment


                #8
                Hey Linda, thank you for sharing ❤️

                I find the progression part the toughest part for me to deal with mentally. I seem to cope ok generally with the things I cannot do as I work around them or somebody helps me to do it………however looking back at the person I used to be is so, so tough to do.

                Stay strong x

                James
                Foxes Never Quit 💙

                Comment


                  #9
                  Erm, 'Congrats' Linda 🤔🍸🍸

                  I am so not glad that you got ALS but I am so glad that you joined the forum - you bring a wonderful energy to it.

                  I'm honoured to have found another sister.

                  Love you 🤗🤗🤗😘😘😘
                  ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                  Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                  Comment


                    #10
                    Lcfcno1fan yes looking back is tough...small things often for me...a year ago decorated my little bathroom....so much change. We are still who we are James...imperfectly perfect💙

                    Ellie love you too little sister- you're an inspiration💙
                    Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

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                      #11
                      You are a brave strong woman. Here’s to your 2nd anniversary if you want that. This disease is just a b***er. 🙏 for all of us.
                      Bulbar ALS diagnosed September 2021, no speech, PEG fed, using ipad with Predictable to communicate, taking each day as it comes

                      Comment


                        #12
                        Thanks Hakuna I assure you I don't feel brave or strong...just 'rolling with the punches' as we do.
                        💙😘
                        Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

                        Comment


                          #13
                          Hi Linda, good to read your summary of the last year for you, and good to be in this MND family with you. Thanks for the support you bring to this forum (and for pressing like on some of my posts!) xx
                          Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

                          Comment


                            #14
                            LindaB

                            It must have been hard to write that but your warmth and positivity still shines through.

                            I live in hope too 🙏 xx
                            Diagnosed 3rd November 2021 Bulbar Onset

                            Comment


                              #15
                              Heather R always like your posts💙😘

                              GillB thanks....hope is a big deal...we never know 💙🙏😘
                              Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

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